So I put Charles to bed at 3pm on Friday. Usually it's closer to 5 pm.
He has only been out of bed for about 2 hours and even than he was sleeping in his chair. He stared having these ( choking-coughing-gagging ) fits. I don't know how to describe it, but it's very scary. He did this all night and into Saturday afternoon. When I could give him cough medicine. He started having the same problem last night off and on, but not as bad as the night before. He has only had a small amount of ice cream, yogurt and ensure since Friday morning. He doesn't want anything. He can not stay awake for more than a minute or two. He has lost all strength in his body. And he has not had any medicine since early last night.
So has anyone else had this happen so quickly. And if so what do you think is going on. Please be completely honest. I can handle it. TIA
Alma xxx
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AlmaJ67
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My husband followed this same scenario and I thought he had aspiration pneumonia
so I had someone help me get him to the hospital where he was diagnosed with a blood infection and admitted for several days. He is back home and doing quite well or as well as can be expected at this stage of his PSP Maybe it is time to call a doctor?
Hoping you have someone to call to help you. Take care and keep us posted ok?
also, is he constipated? did he pass his stools normally - please tell the doctor to check if the stool is compacted - that can cause a tremendous amount of discomfort, pain and delirium
Please contact a doctor right away. My experience with my Dad this disease can take a turn for the worse all of a sudden and when your loved one recovers they will be weaker than before and progressed further along. Same happened with my dad and when it accelerated, it really took off.
The thing is that we can't do anything for him. He has a health will, that states no kind of medical treatment is to be done. It's very thought out and he made sure to promise him nothing would go against his wishes. He new exactly what was going to happen. And he did not want to live like that. There was a lot of research done before the lawyer drew up the papers. So whatever it is will not have medical attention. But I ask because I want to try and prepare myself for whatever comes.
Be brave, my father's life could have been prolonged but he did not want a feeding tube. It was hard for me and my mother, but we realized we had to accept his wishes and it would be selfish to keep him around Syffeting with no quality of life only because we were having a hard time letting go.
Things get worse Fast when they stop eating and when the choking and coughing is a constant thing, my dad started choking and coughing his last year and that continued to increase despite all our efforts( swallow study; speech therapist; chin tucking and thickened liquids), in the end he coughed so much he could hardly sleep/ he was choking on his own spit. He suffered the worst the last 3-4 months and then it was over. If a sudden event doesn't take your loved one, then the lack of eating and drinking eventually will/ each is different. If you can, please contact hospice and see how they can make him as comfortable as possible. My thoughts and prayers are with you.
He has been on hospice since 7/29/15. And they will be out tomorrow and I have a list of questions. Thank you for all your help. I know it's going to be hard, but I also know it has to be done his way. And I really don't want him to stick around for everyone else, not when he is the one suffering.
Imli you have been very helpful, you were honest and that is what I wanted. I really thank you for that. So sorry to hear about your dad. Sounds like all of you had a very rough time of it.
Alma xxx
Alma, I think his end is near as I am sure you realise. C is also choking and coughing with increasing frequency although not yet as badly as you describe. Be strong.
Sorry but it does seem to be the way according to people at our PSPA group who have lost their loved one, there comes a time when the body is worn out and the mental strength that has fought so long is no longer able to and PSP wins. Try to make him comfortable, he seems an organised person who made sure his wishes were known. Get the doctor who should be able to ease the coughing fits.
My wife not that far down the PSP road though regular choke/cough fits with a wheeze breath are terrifying and sleeping most of day up a lot at night.
Be strong for him and respect his wishes though it feels cruel.
Same thing happens to my wife and she has a PEG tube. I occasionally let her have some food and drink by mouth, which is usually a mistake. Need to avoid thin liquids. And NO ice cream, as it is still considered a thin liquid as it goes down the throat. My wife had some ice cream and cake while celebrating my birthday back in March. She started having the fits that you described and after using suction for several hours, we ultimately headed to the hospital ER. They admitted her and determined she had aspirated. Resulted in a 4 day stay.
So hospice and social worker were out and he is totally bed only. Yes this is the ending stage. Doesn't look like months, looks like weeks. This is because he has a " no action to be taken" health will. His doctor has put him on a schedule for comfort. These were his wishes. So they will be carried out accordingly. Thank you for all the advice and well wishes, much appreciated.
Easterncedar thank you for the hugs. Always in need of them. My husband is still very agitated and is having a hard time staying in bed. Thank goodness for a hospital bed with side rails. He is on a routine of medications. Just want him to be as comfortable as we can get him. 🛌
Alma, you have not posted for awhile and I am wondering if you are ok. My mom, (though non PSP) experienced the very same symptoms in the end. She stopped eating then drinking. We put dropperfuls of water in her mouth then wiped her mouth with glycerin sticks. Can't they prescribe something for the agitation? I think it is wonderful you are following his wishes. I know that is a very difficult thing to do. I tried to explain to someone before that you don't starve to death. It is as if the body no longer requires the nourishment and the appetite goes. I once read that as you get close to passing away the "veil" diminishes and you can see and experience those already gone before.
My mom kept saying the room was full of dead relatives and then that they were waiting on the other side of the door for her. And here is a very peculiar thing that happened which other people I know experienced as well with loved ones they lost.
Often, a day or two before they pass they get a second wind. My mom who was in a coma like state awoke asked for water and soup! She could barely whisper a word or two up until that time but when she awoke she talked and talked for hours! We thought she was having a turn around but she passed in my arms peacefully the following day. The entire family were there off and on all day and at one point we surrounded her bed holding hands and told her we loved her but it was ok to let go. This is what I want for my husband. and like yours he does not want intervention.
Jayne thank you for all your information. You sound like you really get it. My Charles is not eating much, about 16 oz of soft foods , applesauce, yogurt. Not much on the liquids either. He didn't have a bm for 7 days. And this poor man was so exhausted yesterday after finally getting cleaned out. It was very stressful on myself and my daughter also. Now we are having a problem trying to stop whipping out his penis and going wherever. He his totally bedridden now. And he only has real time thoughts once or twice a day. We witnessed the seeing those that passed away with my other daughter that passed in 2009.
Short story but honestly it is true. Yesterday Charles had taken off his depends and urinated on bed. I took one look and said I have to get out of this room and calm myself down before I deal with you. Do I was in the other room where I have my daughter that pasted photo, small heart urn and her old music box. I have not picked up that box in over a year. I hear the music. I pick up my phone and say where is it coming from and than I realized it was the music box. I picked it up and it stopped playing. I said okay I am calm now, I will go clean up your dad. It was a good omen. I believe she is near and helping her dad now like so many helped her.
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Swallowing Progression
CBD progressing fast 
Progressing fast
Me again... progression with mum
Progressing very rapidly
